April 2015
Newsletter

Adult Rehabilitation – A model halfway home project for Paraplegic patients was opened in Trivandrum Institute of Palliative Sciences (TIPS), Arumana Hospital, on the 24th of March 2015.

Funded by Department of Social Justice, Kerala, the project will house 4 paraplegic patients in a month, who have completed their acute care already. The physical, functional, psycho-social, sexual and spiritual rehabilitation of these patients will be done in the specially designed facility in TIPS. The faculty of TIPS will be supported by consultants in all disciplines. Here the patients on their way home will be trained so as to help them lead improved quality of life, with very less dependence on family and community. The model thus worked out will be submitted to the Department of Social Justice with the lessons learnt by the team along with other recommendations.

The bedroom, kitchen and toilet in the facility are disabled-friendly. The stay of an individual patient (with one relative) is for a minimum of two weeks and in special cases may exceed this, but not beyond three months. A questionnaire was developed to assess the patient on admission and on discharge. The findings and observations will be formulated as recommendations and will be submitted to Department of Social Justice periodically.

“India has yet to enhance its large population’s chances of a pain-free or pain-controlled life when they have a severe, pain-inflicting illness, and enable those with terminal illnessesto pass away in a pain-controlled, dignified manner”, so says Sunita Bandewar, an independent researcher in global health, bioethics and programme evaluation.

You can read her review on the pain problem in India, the palliative care movement of Kerala and the NDPS Act amendment of 2014 in the Indian Journal of Medical Ethics Online.

Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months.

Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.

The otherwise-progressive North Indian state of Punjab has so little palliative care. A new beginning is being made in Dayanand Medical College, Ludhiana. Pallium India’s team had the privilege of working with undergraduate students on a two-day introductory program on palliative care, and in a CME program for doctors.

“My grandmother was bed-bound for quite some time before she died. She had asked me to become a doctor. After listening to these two days of classes, I am glad I became a medical student. After I qualify, I shall certainly join a palliative care course”, said a bright-eyed young man.
“This is a great social need. We must take this up as a major activity”, said a senior doctor after the CME program. We congratulate Dr Kunal Jain for his initiative and the Ludhiana team on the success of the programs. The press was enthusiastic too, coming out with several reports in popular newspapers. Here are a few:

Most of the palliative care pioneers of the 1990s in India have been fortunate to be taught by Dr Michael Minton, when he was a member of the faculty of WHO Collaborating Centre for Palliative Care at Sir Michael Sobell House, Oxford.

He continues to visit India and mentor us. Please see his brief report on the recent annual conference of IAPC at Hyderabad. Thank you Michael, for this report and for all that you have done for our people. We look forward to your continued support and to your blessings.

The success of the 22nd IAPCON Hyderabad was highlighted in the March newsletter. I would like to add a few personal observations which reflect the increasing development and sophistication of Indian palliative care.

The growth of community projects beyond Kerala was illustrated by Dr S Bora (Kolkata) reporting on the recent West Bengal community programme, where they have trained a 1000 volunteers in 10 Panchayats and had seen 169 patients by September 2014. Other community projects reported the value of electronic equipment. One is using tablets for keeping and sharing patients records, and another using skype and email to obtain expert advice for their patients.

The 1st prize in the oral presentations was awarded to Dr P Seshachar (Bangalore) who reported her experiences with an innovative shaped feeding spoon for patients with swallowing difficulties.

The winning poster by Dr C Singh (Kochi) reported the successful outcomes of an integrated working relationship between the palliative care and the intensive care teams who regularly met to discuss patients and family issues. This critical topic of needing to recognise when a person is dying and the futility of pursuing further treatment has led to the writing of valuable guidelines, a collaboration between the Indian Society of Critical Care medicine and the IAPC ( ref:Myatra SN IJCCM 2014;18:615-35). The guidelines need to be widely circulated and also could be a model for other countries.

The conference had international delegates and speakers who gave progress reports from neighbouring countries Bangladesh, Nepal, Sri Lanka, Thailand and the United Arab Emirates, all of which had had influence from India.

There was also recognition of the achievements in 2014 . The amendment of the Indian Narcotics law to allow the medical prescribing of opioids and the World Health Assembly statement on the need to integrate Palliative Care (PC )into health care systems. These achievements have involved Indian PC workers who continue to advise the Indian government and the WHO on PC policy. It is an exciting and expanding time for PC and the conference fully achieved its aims.

Dr Katherine Pettus came to palliative care after training as a hospice volunteer and attending a conference on international hospice and palliative care featuring Dr. Rajagopal and Dr. Anne Merriman, from Hospice Africa Uganda. After learning about the lack of access to opioid medicines in developing countries, and training with the Leadership Development Initiative at San Diego Hospice and Institute for Palliative Medicine, she went back to school to study international law and health policy. Since earning a Masters in Health Law and Policy she has been working tirelessly for palliative care advocacy, analyzing the international legal situation that creates access barriers to essential opioids for pain relief, and working with country partners on the ground.

Katherine and other civil society colleagues engage at the Commission on Narcotics Drugs, the Human Rights Council, and UN Agencies to educate countries about their human rights obligations to provide pain relief and palliative care to their citizens.

Read this article in the IAHPC newsletter, where she writes about the various activities that she and IAHPC are involved in.

The Indo American Cancer Association and John and Editha Kapoor Charitable Foundation, in association with Trivandrum Institute of Palliative Sciences, are offering scholarships to practising doctors and nurses, who are interested in learning fundamentals of Palliative Care.

The scholarships are offered to 12 most deserving candidates every year, for the following courses:

6 weeks Certiﬁcate Course in Palliative Medicine

6 weeks Certiﬁcate Course in Palliative Nursing

The details of the training centres where these courses are offered are given below. Please contact the respective training-in-charge for application details.

This article by Cait O’Donnell is really not only about what a palliative care doctor’s child gains; it explains what makes life worth living for any palliative care worker. Why is it that though we deal with suffering and death every day, we are not depressed and frustratied? May be experiences like this make life worthwhile for us.

This reminds me of three of my doctor friends, all of whom died in their early 80s. I know for a fact that they were very much aware of palliative care. However, the well-meaning, caring, doctor children and close doctor relatives had to give them the “best” possible care by giving them “treatment ” in the best health care hospitals in Kerala. This means that they had their last breath with the help of the ventilators, tubes and high-tech equipments with that nurse and may be doctor too! What happened to the “last breath in their own homes, surrounded by all the loved ones breathing the last in peace, love and possibly a spiritual bliss”?

I still feel at peace for having given my husband a peaceful death in our own home.

Dr Sara’s words stress the importance of ensuring that our wishes be known to our family members.

Ashla Rani is a volunteer for Pallium India. She had an accident four years ago, and is now in a wheelchair. A very inspiring person with a positive outlook, she writes about some of the challenges she has had to face and also the people who support her. In this note, she thanks Ambika Pillai, a well-known hairstylist and an award winning make-up artist in the fashion industry.

We hope that Ashla’s message will motivate our society to consider the needs of wheelchair-bound people and not marginalise them.

Being a quadriplegic is not easy, but it is much simpler with loving and caring people around you (especially a mother who has dedicated her life for you). Thanks to Steria for supporting me from day one, where I started and still continue my career. Pallium India, a palliative care centre based in Trivandrum, is my home now. With the partial control that I have over my upper limbs, I do what I can to assist the chairman of Pallium India. When I am here among lots of good people, life is worth living.

There are umpteen things I need help with, on a daily basis. Hair is one among them. When my hair grows, I am not able to dry it or comb it on my own (I can’t wash it on my own, anyway, however short it is); getting someone to cut it has always been a problem for my mother. It is difficult to get to a salon, and no one seemed willing to come to me and do it. However, thanks to everyone who refused to come and cut my hair, I got the opportunity to meet a sweet and warm person.

It was the first time I had been to a salon after being paralysed. And Ambika Pillai’s was the best place to be. Since there was no ramp, they had to carry me all the way from the car to the salon. Thanks to Amal who carried me. Having someone lift and carry me makes me feel as dependent as a new-born baby. But the embarrassment was there only for a moment. The smiling, welcoming face of Ambika Pillai melted all those. Thank you, ma’am, for acknowledging my situation with dignity and something to look forward to rather than with pity and sympathy. Thank you for promising to make arrangements for a ramp as early as possible. It will surely be an inspiration for people like me to come out in to the world. And above all, thanks for promising to visit Pallium India! I am so eagerly looking forward to that day.

One of Pallium India’s most important activities in Trivandrum is the home care program – wherein five teams go out to various parts of Trivandrum to take care of patients in their home setting, five days a week. These teams consist of doctors, nurses, volunteers and social workers. The vehicles that are used for this purpose have been donated by several generous organizations, over the years.

Thank you, CREDAI, for this kind gesture and for your support in helping us reach more patients, in our efforts to reduce suffering. You are giving more than the vehicle – you are sending an emphatic message to the society that the healthy members of the society have a responsibility to look after those in need.

We are very pleased to see the editorial written by Dr. Vijay Thawani, Professor of Pharmacology from Uttarakhand. Medical students learn the basics of therapeutics from their pharmacology professors. Unfortunately, the MBBS curriculum has not been revised yet to include modern principles of pain assessment and management, and hence, our colleagues in Pharmacology are in a great position to change mindsets of budding doctors. Thank you, Prof Vijay Thawani.

We might add that access to pain relief should not be limited to terminally ill patients. An individual’s pain experience can be beyond the powers of imagination of someone who has not experienced it. We have repeatedly found that even a day of agonising pain can drive a person to suicide. Naturally, precautions are necessary to prevent abuse and diversion to illicit sources; but having said that, pain, whether acute or chronic, must be treated properly.

The International Narcotics Control Board (INCB) has launched its Annual Report for 2014, which reveals that around 5.5 billion people – or 75% of the world’s population – have limited or no access proper pain relief treatment.

Diederik Lohman, senior researcher at Human Rights Watch, says: “In the past five years, recognition is dawning that the war on drugs has turned millions of cancer patients into collateral damage: Nobody intended to deprive access to pain medicines, but that’s what happened.”

In the report, INCB notes that drug control measures do not exist in a vacuum and that, in their implementation of the drug control conventions, States must also comply with their obligations under other treaties, including international human rights obligations.

Pallium India, in collaboration with Kollam Pain & Palliative Care Society, conducted an awareness program for police officials at Kollam Janamaithri Police station. Click here to see a photo…

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Palliative Care News from around the world

What is Palliative Care, anyway?
Many people know little about palliative care and often confuse it with end-of-life care, or hospice. Diane E. Meier answers frequently asked questions about this important health care service.

When A Nurse Says Goodbye
“Nurses are people too. We are mothers, daughters, sons, fathers, brothers, and sisters. And we too, have lost loved ones. We know what a breaking heart feels like, and when your loved one is dying, and we have had the privilege of caring for them.” A blog post by Rita Macdonald.

A Simple Question with Profound Implications
“Mike, thank you for taking the time to meet with us and explain things. I just have one last question for you. Do you know what it means to be a man?”
A blog post by Michael Bernhagen.

Why Health Care Tech Is Still So Bad
“He asks me a question, and as soon as I begin to answer, his head is down in his laptop. Tap-tap-tap-tap-tap. He looks up at me to ask another question. As soon as I speak, again it’s tap-tap-tap-tap.”
Robert M. Wachter explores the advantages and problems of computerization in health care.

Integrating palliative care: stories of change from Zimbabwe
Island Hospice and Healthcare (Island) has pioneered the application of palliative care to vulnerable and at-risk populations in Zimbabwe, particularly children and youths suffering from HIV/AIDS and to surviving orphans of all ages. News from ehospice Africa.

What Does Quality Really Mean in Hospice Care?
Hospices have long been renowned for providing a high standard of care, especially by the people and families who use their services, but in an era where care is under more scrutiny than ever before what does quality really mean?
Jonathan Ellis writes in Huffington Post.

PARTING SHOT

Last week, Human Rights Watch reported an astounding development in Russia involving the suicide of people suffering from pain. The report says that while “the Russian government has finally been pressured into acting,” the action by the Government has not been to treat cancer pain, but to “order the online news outlet to delete details of the suicides.”

“Russia has some of the most restrictive drug laws in the world, creating myriad bureaucratic procedures that impede the prescribing and dispensing of opioid analgesics. In layman terms, the unnecessary restrictions mean that patients who need essential medicines can’t get them.”

Human Rights Watch observes that “It is deplorable that instead of addressing the issue, the authorities make critically important public discussion impossible.”

Here in India, no one stops you from telling these sad stories; but do we really care?

When will we realize that it is not about someone else? Tomorrow, it is going to be our turn.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.